Bioethics, healthcare policy, and related issues.
The New York Times today has an interesting profile of Dr. Desiree Pardi, a palliative-care specialist in New York who was diagnosed with breast cancer in her early 30s, and refused palliative care – while still working in palliative care professionally – during her prolonged and painful death.
Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.
She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.
She came to question the advice she had been giving. She thought about quitting. “I just decided I have to believe in what I’m saying,” she said.
It’s tempting to see her treatment choices – demanding extensive low-probability and experimental treatments – as being in some way hypocrtical for someone who had made a point of encouraging others not to continue with therapeutic treatments near death. At times she was quoted expressing anger at doctors who recommended palliative care or hospice, and at times she is described by others as being “in denial” about her own condition – much in keeping with her own attitudes toward palliative care and patients’ beliefs, as seen from her professional perspective. The article at times seem to imply that there is in fact a contradiction there.
But I think, and I think most people in the field would agree, that there is no tension between active therapy and palliative care – that both are available options that different people will choose for different reasons, or even that a given patient will choose under differing circumstances. The idea that some patients would reject palliative care is hardly new; the fact that one such patient would turn out to be a palliative care specialist is merely a coincidence, ironic at most, and hardly that. (Nobody claims that palliative care is right for everybody.)
From that perspective, I was a bit annoyed with this article, because it seems to imply that there really is something wrong in the way Dr. Pardi practiced as a physician, or worse, that there is something wrong with palliative care – that it “underestimates” patients, that it is something that palliative care workers try to impose on others but reject for themselves, or even that it is the sort of “death panel” that the insane right wing keeps conjuring up. Also annoying is the tone attributed to Dr. Pardi herself (she was dead when the article was written): that palliative care was in fact something to be avoided; that she herself questioned whether it was right for her to offer it to her own patients. It’s not clear how authentic this is, but I hope Dr. Pardi was not as much “in denial” about her own profession – let alone her health status – as the article seems to imply; if not, the problem then is not that there is something wrong with palliative care, but that a doctor in that field had not thought deeply enough about what is right with it before it became an issue for her personally.
The meaning of the piece for me was that people’s personal choices are unique and not always predictable, and that this is the reason patients must be allowed to choose the terms of their own treatment. (Dr. Pardi – an MD/PhD with extensive experience – chose to allow her husband to be the point of contact with her own caregivers, and never knew the extent of her own disease, though she was adamant in her choices about how aggressively to treat it.) There is a reminder here of the degree to which aggressive treatment might serve some patients’ needs (Dr. Pardi’s final course took barely a year and a half from her last remission to her death, but it is likely that she extended that period somewhat by refusing palliative-only care and insisting on a high-calorie diet) – though that hardly renders palliative care unnecessary, or argues for returning to the days when painful aggressive treatment was the only option available.
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